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I feel so low
So smallSo darkYet so huge So vastand swollen,By numbness, Pain,ParalysisPushing me outward,Toward the voidI cannot feel myselfI cannot be myselfI am no longer who I am.I am stuck to the floor, to the chair, My limbs are stuck to each other.There is just separation.There is just emptiness.There is just agony.There is just nothing.I am disappearing by degreesEach time it comes.It is an intolerable, physical assaultOn my being.I find I can no longer bear even less than I used to bearYet more, somehow, even so,because it keeps adding on and adding on;The thousands and thousands of timesOver all the months, the years, the decades.Continually adding upGreater and greater still,Along with the denialThe unhelpfulnessThe negationThe neglectThe abandonmentThe harmThe ignoranceThe cruelty and the impossibility of it all.Yet still I am left strugglingNot really knowing how to bear it,Not really knowing the best way through it,Not even knowing if something or someoneCould actually …

The chilling part was White's "we're responsible" admission , the
throwaway remark at the end, that they "transposed epidemic ME into
endemic ME"- I have been trying to make sense of that
: "epidemic" describes a disease that's widespread and "endemic" means
a disease that is found in a certain place and is ongoing; that is not
how I would describe the insideous process.

It would have been much more accurate had White admitted they "
expropriated ME and tried to transpose it as CFS." With disasterous
results, not least for the PACE Trial investigators.

It is hard not to be very angry at all the psychiatric misdirection,
that has so dominated ME for themlast three decades, condemning
seriously ill people, like my wife, to a life of constant suffering,
that few could possibly comprehend, it is so far off the scale, without
any investigation, any treatment or any hope of a cure.

Now that it has been so discredited, so comprehensively torn to
shreds, it is hard to see how the psychiatric lobby can defend the PACE
Trial, or ever be taken seriously again. Their toxic research has been
exposed as vacuous, their statistics as zombie science, their work as
incomprehensible and amateurish.

You would think nobody would
take those psychiatrists seriously again, but tragically we live in a
world where it is not truth but spin that counts. Given the vast resources
at their disposal, especially their access to the media, expect this to
be spun as a tale of well meaning scientists doing their best to help a
hostile patient population, never mind the decades of deliberate
manipulation, the denial, the turning a blind eye to the overwhelming
physical evidence , debunking the psyche's insulting claims that ME is a
result of misguided thinking.

Never mind the horrific devastation, pain and suffering people have had to endure as a result. Never mind the profou…

The issue, regarding the 'PACE' trial, for the ME Community, as always, is about truth and the
integrity of science. Sadly, it is psychiatry that has worked for more than three decades to deny the physical existence of ME, by hiding it in a poorly defined cohort of patients,with a very wide ranging definition of fatigue.

It is psychiatry, that , without a credible shred of evidence, has aggressively sought to have people with ME, a WHO defined Neurological Disease, classified as mentally ill, victims of misguided thinking or hysteria and misdirected the focus away from the most serious and disabling symptoms, towards a generalised fatigue focus.

It is psychiatry that has forcibly removed patients, against their will from their homes and consigned them to psychiatric institutions, with tragic and even fatal consequences.

It is psychiatry that has encouraged the proscription of tests that might help identify physical illness.

What a challenge it has been- converting "Notes for Carers" to the Kindle format- it has taken me weeks; anyway it is done and is available right now in the Kindle Store !!

The book retains the charm of the print version - although not so many illustrations, in addition it contains three extra, chapters including an extraordinary account of the dreadful impact of cognitive dysfunction in ME, which is so often dismissed and underplayed as "brain fog".

There is also a new chapter on coping.

It is a joy to introduce the Kindle edition of "Notes for Carers" !!!

Thanks again to all who contributed and made this book so special and to everyone for all the incredible support and wonderful affirmation I have received. xx

How do you convey how very ill you are,When words seem to lose their meaning, as the illness takes a tighter and tighter grip on you?First you say, "I am ill."Then you say, "I am very ill."Then I am "seriously ill."Then I am "severely ill."Then I am "worse."Then I am "very severely ill."Then I am "profoundly affected."You try to explain each symptom,But how do you convey multi- level pain,impacting with different sensations?How do you convey it is somehow more complex, torturing, intenseThan anything you would know?"Pain," I say. "Burning pain. Throbbing pain. Itching pain. Numb pain.""Worsening pain.""Screaming pain.""Deterioration."Then "more deterioration."Then "worse deterioration.""Agony, torment, torture, literally."Then there is the hypersensitivity."Acute.""Extreme.""Unimaginable""Indescribable.…